Avery Grace

Avery Grace

Saturday, November 21, 2015

So our baby needs brain surgery.

Maybe it's fitting that in the month of Thanksgiving, where we try to shift our attention to one of gratitude, that we are about to face our toughest challenge of 2015.  If we were any other parents, this challenge may indeed be our toughest yet, but the last 10 years of being parents have been far from easy.  Thank God for gratitude. For without it, I would be lost.   I have written and spoken of gratitude hundreds of times.  It is my saving grace, and the absolute ONLY reason I haven't completely lost my shit.  Because when I truly sit back and think about it, even with the challenges, the struggle, and the heartache, our life is STILL pretty spectacular.  And our children, despite their diagnoses, differences and downright crummy luck, are happy, wonderful, and amazing little people who make a profound impact on those who know them. 

I could write a book about how motherhood certainly isn't at all as I planned it to be, and I could tell you all about my feelings, my expectaions, how I've changed, how I cope- but this time it's just not about me.  It's about one precious little boy (and his adoring three big sisters.)

..."and she loved a little boy very, very much- even more than she loved herself." Shel Silverstein

Sweet Paxton.  Our little peace baby.  Our last, and littlest love.  "Pax-man" and "bubby" to his big sisters.

Please keep this adored baby in your thoughts and prayers over the coming weeks if you will.  The latest MRI of his brain indicated that he needs the surgery that will treat his ventriculomegaly/hydrocephalus.  We go in for pre-op on December 2nd, and his surgery is the morning of the 3rd.

His brain surgery is three fold, with two incisions on his head and one in his abdomen.  He will have this shunt forever we hope, though most of the time a few revisions are needed in a lifetime, hopefully not many since each one is brain surgery.

Paxton is 22 months old.  He is the HAPPIEST little dude.  He smiles and laughs ALL the time, and loves balls, dogs, scooting around on his bottom, tickles, food, and his momma.  He is bright and silly and has so much love and life in his soul.  We are so GRATEFUL for him, for his doctors, therapists, amazing caregiver, and friends.  It's going to be a bittersweet holiday season for us, but we remain optimistic, energized, and ready to embark on yet another new journey. There is no greater pain than seeing your child struggle.  It is my hope, that the road to recovery, though bumpy, will be well worth the infinite joy that will most certainly result from getting to see this baby thrive. 

Monday, August 3, 2015

August 2, 2015

Coping.  It's meaning differs from person to person and can look as different as each of the experiences we face.  I've been told a time or two that I "cope well." Wait. What?  I beg to differ.  I once had a professor in grad school tell me I needed to quit my full time job and focus on school work only because when I had too many balls in the air, I couldn’t “cope.”  I thought I was overwhelmed then.  If only I knew.

If I am being truthful, I am not sure I cope at all some days, as I find myself mechanically going through the motions.  But maybe, from the outside looking in, it appears at times that I cope well. But all of us simply move forward with the cards we were dealt. Don’t we?  If coping means I seek out help for my kids and their needs, then I guess I cope well.  But day in and day out I can’t shake the underlying stress of it all.  So after years of “coping” I can tell you one thing for sure: some things we never "get over."  Try as we might to not let them take over and define us, they most certainly change us.  Some days I think I may be even better for it, and others I am certainly more bitter. 

I will never get over losing a part of Avery to Rett Syndrome.  Rett took my social, babbling, verbal, eager to connect baby girl and changed her forever.  Our DAILY, even hourly lives, are now so drastically different than we thought they would be when she was a healthy, happy, social, engaged baby girl.  I can't get over it.  I deal, I even "cope" if you will, but I am forever changed.  Forever heartbroken.  Forever grieving.  Even 7 years after her big regression.  Some of those feelings are as raw as they were as I watched her drift away.  I am also capable, most days, thank God, to choose gratitude and joy over sadness and fear, but it is a constant internal battle for me.  And then there is Paxton.

I had a doctor say to me last week regarding Paxton, "well, I guess he wouldn't be one of your kids if he didn't have issues."  Awesome.  Thanks.  My children bring with them, like all of yours, a unique set of challenges and strengths, but some days I am oh so tired of being strong. 

Paxton, at 18 months, is on the brink of either making drastic progress and demonstrating that he may indeed have a chance at a somewhat “typical” childhood, or he may not.  The road less traveled for most of you is a road I am all too familiar with.  A road, or shall I say, a childhood, with several therapy appointments a week, a road where battling insurance companies and waiting on approvals is part of the journey, a road that requires spending every last dime and then some to ensure that your child is getting what he/she needs just to be the best that they can be- just to maintain skills, and maybe, hopefully, gain some.  I’m up for the fight, but admittedly, I don’t want to do it again.  I don’t want my child(ren) to have to work so very hard to learn simple, basic life skills.  I want their days to be filled with playdates, homework and sports, not therapies, diapers and evaluations.  But here we stand- waiting to see which way it will go for our beloved son. 

By this age, we knew with our middle girls that they were on target.  That autism and disability weren’t part of their personal struggles.  Kaylin has ADHD and some social issues, and even Presley has a dx of a connective tissue disorder called Ehlers Danlos Syndrome- but their intellectual functioning is on track.  And in most ways on most days, they are the least of my worries.  After all, they can understand what we say and speak their minds.  And they do so all the time.  Heck- lets be honest, the fact they can wipe their own bottoms and feed themselves makes them super easy in our house.

So sometimes it looks like Bryan and I are “coping.”  Other times we are ridden with anxiety and are a down right mess, eating to much and indulging in a little more wine than we need, but I guess  it’s all in the eye of the beholder and the perspective of the observer.  Having an army of therapists, teachers, social workers and more is an extraordinary blessing, but it also makes us open targets for judgment, endless opinions of others, and occasionally, shame.  Most people’s lives aren’t on display for well meaning professionals to critique.  I make lots of mistakes.  Every. Single. Day.  But we have to get up and keep trying.  Using whatever coping tools we have to move forward, and march on.  I hope and pray my kids emerge from their childhood journey as positive, courageous, hard working, happy, and grateful people.  For my two with special needs I would say I wish the same thing, but my wishes for them are far more profound.  I wouldn’t wish this pain and worry on my worst enemy, but thankfully, amidst the sorrow arises more joy than I ever imagined, and deeper love, appreciation, faith, grace, joy and hope than I would ever be able to comprehend if my circumstances were different.  I am learning day in and day out how to proceed.  I am lucky to have support and resources to keep me from drowning.  I am weary.  I am fearful.  But I am strong.  Call it coping, or whatever.  I call it moving forward, living in the present, and starting each day anew with knowledge, tolerance, perspective and courage.   

Monday, May 18, 2015

Fear, hope, and gratitude.

If I could only freeze time.  I live in two different universes.  One place I reside is a place of fear.  A worry so deep that it can, quite literally, take my breath away.  In the last hour alone, my Facebook timeline produced three articles that no one should ever have to read.  One reported on the possibility of sudden death in epilepsy, another about hydrocephalus shunt complications, and a third about autism drownings.  YUCK. I would rather spend all day looking at friends beach pictures with their totally typical, healthy kids building sandcastles while they sip on margaritas in their luxury beach chairs  (a reality that will likely NEVER be mine at a beach with my bunch.)  This fear is something I have to push out of my brain several times a day.  It can catch me off guard,   like last  Saturday night when I saw teenagers in their prom dresses posing for pics outside their homes in my neighborhood and I immediately grit my teeth and worry about my special kids entering the teenage years and what on earth that will look like.  When Avery is taller than me, yet still needs me to lift her and change her diapers, and meet her every basic need.  What if we can’t afford prom dresses for our other girls because of the many needs of their siblings?  What if, God forbid, something happens to me or Bryan... who will make sure Avery and Paxton are cared for, loved, adored, and sheltered from the horrors of institutionalization?  And if something happens to me, who on earth will do my girls’ hair?  :-)  I can be fine one minute, feeding Avery, wiping her mouth after a bite,  or changing her diaper- and I have a moment of panic, because who could ever possibly care for her as well as we do having loved her since birth?  I can’t describe how terrifying these gut-check moments can be.  But these moments are part of my reality.  They are part of the process of special needs parenting.

The other place I live is a place of hope.  Hope that someway, somehow, Bryan and I will figure out how to continue to provide the best we can for our kids.  Hope that Paxton doesn’t end up with an intellectual disability like his sister, and will be able to communicate his wishes, dreams, desires and ideas. Hope that he will one day walk, maybe even run. Hope that Avery stays as mild mannered and happy as she is today.  And that her health stays stable and her epilepsy controlled. Hope that the sacrifices Presley and Kaylin have to make don’t make them bitter, and hardened to the realities of their circumstances.  Hope that my marriage survives the extraordinary stress of special needs, and multiple medical issues.  Hope that as the days carry on, I will find a way to maintain some resemblance of balance in my life, and the financial and physical burdens and worries will one day ease. 

But neither place is a very wise place to reside.  While fear enables us to plan for the future, it otherwise is a waste of energy.  Because the future is never predictable.  Hope is almost equally as dangerous.  If we spend our days wishing for brighter ones, then we miss out of the beauty of the moment.  And the light illuminating the many blessings that already exist all around us. 

I’ve written over and over again about the process of learning to 'live in the moment.'  And I wholeheartedly believe in this ambitious endeavor.  But we have some pretty hard moments.  Moments of fecal smearing that would make a grown man cry, moments of gut wrenching news from doctors, screaming fits during therapies, moments of profound isolation and sadness, moments of sheer exhaustion after being up night after night after night for the last NINE years.  Thankfully, those moments are fleeting, and are surrounded by much lighter, easier, happier moments.  Moments where Avery reaches out to hold your hand or wraps her arm around your neck while smiling and laughing, moments where your 7 year old writes her first book about her disabled sister and how to include her and love her, moments when your motor delayed baby figures out a way to compensate, despite his muscle weakness, and move from point A to point B with a goofy grin all over his adorable face.  Moments when he says mama, over and over and over again... but I NEVER tire of hearing it for I have a child who once could say it and lost that skill.  Moments where your 4 year old tries with all of her might to connect to her biggest sister, and protects her baby brother.  Moments where your family or friends check in, just because they know you had a shitty day full of appointments and bad news.

Our days hold a thousand shining moments, and those are the ones I try to focus on.  The ones I remind myself in the hard moments to be grateful for.   To be grateful for a million different reasons.  Perspective is a beautiful thing.  Every single moment, good or bad, that I encounter, can be perceived any number of different ways.  We really can CHOOSE to be forgiving, easy going, happy, and most importantly, grateful.  Gratitude is the best and easiest way to navigate my world of special needs.  A world with many painful moments.  But that doesn’t mean I am not allowed to feel sad.  I own being sad.  I have a right to it, and I have moments that it can overcome me, and bring me to my knees. Thankfully, there is always gratitude to help me refocus.   Because it’s easy to recognize and realize how wonderful my life is, and how spectacular my children are, just as they are.  Today.  If only I could freeze it- because today I know I can do this. Today is all I am guaranteed, and I want to spend my moments, the good, bad and otherwise filled with grace, joy, hope, and peace.
*the latin translation of Pax is “peace.”*

Saturday, February 14, 2015

Holiday Letter 2014

Hearts Full of Love

There is a quote I love that says “If you think our hands are full, then you should see our hearts.”  THIS is our new family motto.  2014 started out with a bang as we welcomed our 4th precious baby.  Paxton Graham Beeson arrived on January 10th, and this little dude has stolen our hearts every day since.   He and his three sisters fill our souls with love and joy, and we are certainly savoring every moment of his baby days and being mindful to live each day to the fullest.

2014 marked another big event in that Bryan and I have now spent 10 holiday seasons together as a married couple!  This past October we celebrated our 10th wedding anniversary.  We both feel so blessed to share our lives together, and are excited for a lifetime of memories to come. 

2014 was certainly not short on life lessons, beautiful moments and a few heartaches.  Weeks after we welcomed our beloved son in to our family, we learned of some potential serious risks to his health and development.  The first signs were a failed newborn screening, and club feet, and then in the weeks to come we grew concerned with his rapid head growth and delays in developing motor skills.  In the months that followed, and after countless doctors and specialists, we learned that Paxton has a brain condition known as ventriculomegaly /communicating hydrocephalus.  Despite the grim and potentially life threatening diagnoses, Pax-man has defied the odds and continues to develop at his own pace, making steady progress and smiling and laughing all the way! He is an absolute joy, and he brings so much laughter and light in to our home and hearts.

Presley Hope, our funny, easygoing 4 year old continues to thrive in whatever environment we throw her in!  She loves preschool, dance, swimming and gymnastics, and keeps us giggling with her quick wit and awesome sense of humor. 

Kaylin Joy is a first grader now!  She continues to keep us on our toes, and though she challenges us at times as parents, she has such a loving spirit, and is an AMAZING big sister.  She is about to embark on her first volleyball season (she’s a good head taller than your average first grader,) and enjoys gymnastics, swimming and being a daisy scout. 

Our sweet Avery Grace is plugging along as well.  It’s always a little hard to answer when well meaning friends and family ask how Avery is doing.  The short answer is, “great!” The long answer would entail a detailed description of how we learned long ago to throw out our expectations of Avery, and just enjoy her for who she is and what she can do.  In truth, Rett Syndrome/severe autism has taken away so much from our precious daughter.  At 8, Avery is still and likely always will be 100% dependent on us to meet her every single need from feeding, to dressing to diapering and so on.  However, her easy going nature and genuinely happy disposition bring a soothing peace to our sometimes chaotic household, and we adore her- just as she is.  She is able to understand some simple language, and can identify pictures and some basic wants on her iPad, which is also her communication device.  Between Avery and Paxton, we literally clock in over 25 hours of therapy a week, not to mention doctor visits and trips to and from the girls’ three different schools.  But as busy as we are, our time together as a family is all the more cherished and appreciated. 

Thankfully, this summer we were able to get away for a week in Atlanta visiting family, followed immediately by a week in Destin, Florida.  It was so good for our souls.  The energy from the ocean and love we felt from friends and family were so uplifting and rejuvenating.  It was our first family vacation in a long time and we loved (most) every minute of it.  All in all, life is pretty wonderful for us.  The challenges we face as a family really do seem to make us stronger and more grounded.  We don’t sweat the small stuff, and try to remember daily the joy of living life in gratitude.  We are so incredibly blessed by our supportive family, friends, therapists and an outstanding caregiver for our kids.  It’s the relationships in life that make it worth living, and thankfully, we have many that we hold dear and that enrich our lives tremendously.  We hope your holiday season and 2015 are full of light and laughter, and we ask that you keep Paxton, Avery, Kaylin and Presley in your thoughts as we continue their paths toward healing and wellness.                                   

Love, Bryan, Jenny, Avery, Kaylin, Presley and Paxton Beeson